Caretaking and relationships

June 1, 2020 8:07 PM

Have you been the full-time caregiver of a parent with dementia? What did it do to your relationship with your partner? Any advice on minimizing fallout? Best practices?

Especially if you’ve done this in a small space and/or when your partner deals with a mental illness (that chiefly affects interpersonal relationships), and you’re committed but not at the marrying place yet.

posted by cotton dress sock to Human Relations (5 answers total)

Best answer: My advice isn't the best of advice, but you really need to figure out what you can do realistically. Caring for someone with dementia is a 24/7 job, Is it just going to be you? Because it really really can't be. You don't state the kind of dementia or how the symptoms present which will make a difference but regardless it is just hard.

You need to figure out support now. How much can your partner contribute? Will they at all? How much outside support will you have? Can you get respite care? Enroll him in an adult day program?

Expect that the more actual caregiving you do, the less time you will have for your partner. Also, dementia can cause pretty severe personality changes in people, you may be dealing with some pretty extreme reactions. Expect that you won't be able to emotionally support your partner during this time. That you are going to need someone who is stable, reliable and strong to talk about your frustrations, and get emotional support from. This is hard, hard work. Your partner needs to shore up their support system too, especially depending on how much they rely on you.

I've seen relationships weather this type of thing and I've seen them fail. It's easy for resentment to build up over seemingly small things . It is an experience that is utterly draining. Everyone is tired all the time. Making some time for eachother on the regular can do alot to abate this type of this stuff. Also clear communication really really helps.

My MIL is independant but suffers from dementia, and right now there's alot of emotional labor going into her feelings and when she starts explaining things like current events and it's clear where there is a cognitive decline. It's complicated but manageable. She has a plan to move to a long term care facility as her symptoms progress, and honestly it is so relieving that this is her plan to me.
posted by AlexiaSky at 9:11 PM on June 1, 2020 [7 favorites]

It sounds extremely condescending, but I've found it helpful to understand that sometimes you need to parent other people like children. If you understand that it's not their fault, and that they just can't manage to do better than they are, it is less infuriating when they fail.
posted by lucidium at 9:39 PM on June 1, 2020 [2 favorites]

Best answer: My family has chosen to care for my father at home. We have had many advantages that made it bearable. If I was doing this by myself, in our own home, it would be terrible for my relationship with my partner as well as with my father. He is almost six years into it and still going strong so you should go into it assuming it could be longer. I suggest that if you do it you consider that you are doing it until they go into a facility so you don't feel that as a failure. There will be a tipping point where you are not adding considerably to their quality of life by keeping them at home yet they are descimating yours. I am so sorry, it is a hard row to hoe. Like many people in this place, I have more advice than most people would want, feel free to memail me either to vent or to hear more about my experience so far.
posted by InkaLomax at 5:20 AM on June 2, 2020 [2 favorites]

I have not been a caregiver to an older adult yet, but I am a caregiving and aging researcher. My focus has been on caregivers to older adults with dementia. I would recommend getting involved with a caregiver support organization, if that is something you think might work for you. These organizations can help you figure out the best way to provide care, offer resources and advice, and importantly, offer social support and camaraderie.

Some helpful resources to get started (in addition to reaching out to your parent's doctor):
https://www.nia.nih.gov/health/getting-help-alzheimers-caregiving
https://www.alz.org/help-support/caregiving
posted by stripesandplaid at 6:44 AM on June 2, 2020 [2 favorites]

Best answer: My sister and I helped to care for my dad. My parents, my sister and I each live in different states so it made it challenging. He lived 10 years from his diagnosis of vascular dementia. As he got worse, my sister and I traded off months: one month she would fly out and spend 10 days, the next month I would, and so on. Our help gave Mom a break, and it also gave her something to look forward to. It was hard on everybody. Dad was willing to go into a care facility, but Mom wouldn't hear of it. Neither would she consider attending a caregiver group. We were certain she would kill herself before he died, and to this day I don't know how she did it. Each time I left I was utterly drained - physically, mentally and spiritually. My sister and I did the research and passed on everything helpful we could glean from other caregivers and from the literature.

And it was so worth it. Hardest thing I've ever done, but it seems so little after the lifetime of love and sacrifice he gave to me. I was blessed to have a spouse who fully supported me in the travel and time I spent. It was not inexpensive to do so much flying, yet he never complained. For those years, he "carried" me emotionally when I would come home drained. What helped us all was to keep reminding ourselves that this was a season. It would not last forever, and it was our last chance to show Dad how much we love him.

It would have been extremely hard if my partner either couldn't be fully committed to supporting me or if they had physical or emotional issues of their own. I don't know that I would have had the strength to not expect them to support me fully, or to carry their burdens at the same time I was supporting my parent. All I can tell you is to be realistic about what you can really do. If your support has to be limited to your parent, I think a care facility would be a good alternative. You may have to re-evaluate the strength of your partnership, as well.

We were constantly trying to balance respecting our mom, who has strong opinions and was of sound mind, and keeping both Mom and Dad safe. We didn't always do it perfectly, I'll be honest. And when Dad passed, Mom was so exhausted she didn't even want to have a memorial service and insisted that my sister's and my husbands and our children not come out. That was probably the hardest thing we had to deal with, because it meant we didn't have our support system with us in the aftermath.

Blessings on you. This is a strenuous journey, but an incredible experience of growth if you'll let it be so.
posted by summerstorm at 2:05 PM on June 2, 2020 [2 favorites]